Development, validation and reliability testing of the hospice care environment scale.

BACKGROUND: WHO stated the environment is an important factor affecting the development of hospice care. The environment is the sum of factors affecting behavior besides the individual factors. Currently, a scale to comprehensively assess the hospice environment of nurse is still lacking. This study aimed to develop an instrument to investigate the environmental factors affecting hospice care of nurses. METHODS: Literature review and a semi-structured interview were conducted to form the items pool of the Hospice Care Environment Scale. Two rounds of Delphi expert consultation were conducted by 16 experts to revise the scale dimensions and entries to form the Hospice Care Environment Scale. A psychometric evaluation was then performed among 530 oncology nurses in a large tertiary oncology hospital in Hubei Province. The 500 valid questionnaires were randomly divided into two groups in a 1:1 ratio, sample 1 (n1 = 250) for item screening and sample 2 (n2 = 250) for quality evaluation of the resulting scale. Item analysis, reliability analysis, validity analysis and acceptability analysis were performed. RESULT: The Hospice Care Environment Scale consists of two dimensions and 13 entries. The Cronbach's α coefficient of the Hospice Care Environment Scale was 0.970, and the Cronbach's α coefficient of the two dimensions were 0.952 and 0.969, respectively, with the Item-content validity index and average Scale- content validity index of the scale was both 1.000. The validation factor analysis showed the standardized path coefficients of each item were basically above 0.5, and the factor structure model was stable and suitable. The average completion time of the scale was about 3 min, which had good feasibility. CONCLUSION: The Hospice Care Environment Scale to assess the environment of hospice care services, has good content and construct validity and reliability. This scale can provide guidance to evaluate the hospice care environment.

A Rapid Review on the Management of Constipation for Hospice and Palliative Care Patients.

Constipation is a distressing symptom that has a high prevalence in patients receiving hospice and palliative care services, particularly in cases of opioid use. A thorough assessment, root cause analysis, monitoring, and prophylactic approach are essential for symptom management and quality of life. This rapid review assessed studies published between 2018 and 2023 to identify strategies implemented by health care professionals to prevent and/or mitigate this distressing symptom. We identified 12 articles that addressed constipation in palliative and end-of-life settings and reported on the need for multifactorial management approaches with a focus on patient-centered care that includes the caregiver(s). Bedside nurses play a key role in assessing, identifying, and managing constipation. Proper documentation and communication with the interdisciplinary team help direct earlier intervention and ongoing awareness of constipation issues. Additional research is needed on specific tools and enhanced guidelines to ensure constipation is frequently addressed and preemptively managed.

Differences in end-of-life care patterns between types of hospice used for cancer patients: a retrospective cohort study.

BACKGROUND: In response to the rapid aging population and increasing number of cancer patients, discussions on dignified end-of-life (EoL) decisions are active around the world. Therefore, this study aimed to identify the differences in EoL care patterns between types of hospice used for cancer patients. METHODS: In this population-based cohort study, the Korean National Health Insurance Service cohort data containing all registered cancer patients who died between 2017 and 2021 were used. A total of 408,964 individuals were eligible for analysis. The variable of interest, the type of hospice used in the 6 months before death, was classified as follows: (1) Non-hospice users; (2) Hospital-based hospice single users; (3) Home-based hospice single users; (4) Combined hospice users. The outcomes were set as patterns of care, including intense care and supportive care. To identify differences in care patterns between hospice types, a generalized linear model with zero-inflated negative binomial distribution was applied. RESULTS: Hospice enrollment was associated with less intense care and more supportive care near death. Notably, those who used combined hospice care had the lowest probability and frequency of receiving intense care (aOR: 0.18, 95% CI: 0.17-0.19, aRR: 0.47, 95% CI: 0.44-0.49), while home-based hospice single users had the highest probability and frequency of receiving supportive care (Prescription for narcotic analgesics, aOR: 2.95, 95% CI: 2.69-3.23, aRR: 1.45, 95% CI: 1.41-1.49; Mental health care, aOR: 3.40, 95% CI: 3.13-3.69, aRR: 1.35, 95% CI: 1.31-1.39). CONCLUSION: Our findings suggest that although intense care for life-sustaining decreases with hospice enrollment, QoL at the EoL actually improves with appropriate supportive care. This study is meaningful in that it not only offers valuable insight into hospice care for terminally ill patients, but also provides policy implications for the introduction of patient-centered community-based hospice services.

The Role and Professional Standards of the Adult-Gerontology Nurse Practitioner in Hospice and Palliative Care.

The adult/gerontology (gero) nurse practitioner (NP) delivers primary and/or specialty palliative care to persons and their families who live each day with a myriad of serious illnesses. In this role, the adult/gero NP uses their skill set to address the whole person (physical, psychological, social, and spiritual/existential) to improve the quality of life for persons they care for. This article is the fourth in a series of 6 highlighting the different roles of the adult/gero NP and the advanced certified hospice and palliative registered nurse, and how these 2 roles overlap. The purpose of this article was to provide details of education and certification pathways for these NP roles, describe the overlaps in clinical care, and illustrate how the adult/gero NP in palliative and hospice care can contribute to leadership in program development for care of persons and their families who live with serious illness.

Bereaved Respondent Perceptions of Quality of Care by Inpatient Palliative Care Utilization in the Last Month of Life.

BACKGROUND: Under traditional Medicare, accountability measures are specific to each healthcare setting. With the growth of alternative payment models such as Medicare Advantage, the focus of accountability measures can be on the longitudinal episode of care. OBJECTIVE: Using the last month of life as the episode of care, examine bereaved family member perceptions of the quality of care by site of death and inpatient palliative/hospice care. DESIGN: Retrospective cohort study using the National Health Aging Trends Study waves 3-11. SUBJECTS: US decedents age 65 and older with family member or close friend survey response. MAIN MEASURES: Overall rating of the quality of care, perceptions of symptom management, being treated with respect, emotional/spiritual support, communication, and receipt of care that the decedent did not want. KEY RESULTS: Among 2796 interviews (weighted N = 12.6 million), 25.7% died at home with hospice, 10.9% at home without hospice, 10.0% in the ICU, 6.4% at a palliative care unit (PCU), 6.4% at a hospice IPU, 9.1% at hospital without inpatient palliative care, 13.2% at a nursing home without hospice, 9.8% in a nursing home with hospice, 4.1% at a hospice residence, and 4.4% at other locations without hospice. Dying at home with hospice received the highest rating of quality of care (60.2% stated excellent care) while the adjusted marginal differences in sites of death with inpatient palliative care services were rated lower: hospice residence 25.6% points lower (95% CI (-13.7%, -37.5%)) and a freestanding IPU was 16.9% points lower (95% CI (- 4.9%, -29.0%)). CONCLUSION: Examining the episode of care as the last month of life, hospice at home is associated with higher rating of the quality of care while inpatient palliative care services in hospital, hospice residence, or hospice IPU settings are rated lower.

Perceptions of Bereaved Caregivers and Clinicians About End-of-Life Care for Patients With Destination Therapy Left Ventricular Assist Devices.

Background Patients with left ventricular assist devices (LVADs) implanted as destination therapy may receive suboptimal preparation for and care at the end of life, but there is limited understanding of the reasons for these shortcomings. Exploring perceptions of individuals (caregivers and clinicians) who are closely involved in the end-of-life experience with patients with destination therapy LVADs can help identify key opportunities for improving care. Methods and Results We conducted semistructured qualitative interviews with 7 bereaved caregivers of patients with destination therapy LVADs and 10 interdisciplinary LVAD clinicians. Interviews explored perceptions of preparing for end of life, communicating about end of life, and providing and receiving end-of-life care, and were analyzed using a 2-step team-based inductive approach to coding and analysis. Six themes pertaining to end-of-life experiences were derived: (1) timing end-of-life discussions in the setting of unpredictable illness trajectories, (2) prioritizing end-of-life preparation and decision-making, (3) communicating uncertainty while providing support and hope, (4) lack of consensus on responsibility for end-of-life discussions, (5) perception of the LVAD team as invincible, and (6) divergent perceptions of LVAD withdrawal. Conclusions This study revealed 6 unique aspects of end-of-life care for patients with destination therapy LVADs as reported by clinicians and caregivers. Themes coalesced around communication, team-based care, and challenges unique to patients with LVADs at end of life. Programmatic changes may address some aspects, including training clinicians in LVAD-specific communication skills. Other aspects, such as standardizing the role of the palliative care team and developing practical interventions that enable timely advance care planning during LVAD care, will require multifaceted interventions.

Goal of a "Good Death" in End-of-Life Care for Patients with Hematologic Malignancies-Are We Close?

PURPOSE OF REVIEW: The medical field has a critical role not only in prolonging life but also in helping patients achieve a good death. Early studies assessing end-of-life quality indicators to capture if a good death occurred demonstrated low rates of hospice use and high rates of intensive healthcare utilization near death among patients with hematologic malignancies, raising concerns about the quality of death. In this review, we examine trends in end-of-life care for patients with hematologic malignancies to determine if we are close to the goal of a good death. RECENT FINDINGS: Several cohort studies show that patients with blood cancers are often inadequately prepared for the dying process due to late goals of care discussions and they experience low rates of palliative and hospice care. More recent analyses of population-based data demonstrate some improvements over time, with significantly more patients receiving palliative care, enrolling in hospice, and having the opportunity to die at home compared to a decade ago. These encouraging trends are paradoxically accompanied by concomitant increases in late hospice enrollment and intensive healthcare utilization near death. Although we are closer to the goal of a good death for patients with hematologic malignancies, there is ample room for growth. To close the gap between the current state of care and a good death, we need research that engages patients, caregivers, hematologic oncologists, and policy-makers to develop innovative interventions that improve timeliness of goals of care discussions, expand palliative care integration, and increase hospice use.

End-of-Life Practice Patterns in Head and Neck Cancer.

OBJECTIVE/HYPOTHESIS: Despite the importance of symptom management and end-of-life (EOL) care in head and neck cancers (HNC), there is little literature on care practices in this population. This study examines EOL care practice patterns using nationally established metrics. STUDY DESIGN: Retrospective chart review. METHODS: Review of HNC patients who were actively followed and treated (defined as one clinic note within 90 days, two within preceding 9 months, and having received treatment at our institution) and died between January 1, 2017 and December 31, 2018. The cohort was reviewed for performance on Quality Oncology Practice Initiative (QOPI®) and other metrics. RESULTS: Of 133 patients identified, 52 met inclusion criteria. The average age at death was 69.8 years. About 59% had distant metastases, 30% had locoregional disease, 11% were undergoing primary treatment. Twenty-three percentage received chemotherapy within the last 14 days of life. Fifty percentage of patients were admitted in the last 30 days of life, and 33% died in the hospital. Fifty-four percentage of patients had either Physician Orders for Life-Sustaining Treatment or Advanced Directive on file. Eighty-one percentage of patients had any type of goals of care discussion documented. Sixty-five percentage of all patients received referrals to palliative care and 46% of all patients enrolled in hospice. The median days in hospice was 12. Having a goals of care discussion was significantly associated with utilization of palliative and hospice care. CONCLUSIONS: Provider-documented goals of care discussions were strongly correlated to referrals and enrollment in palliative and hospice care. Areas for improvement include better documentation of treatment directives and reducing low-utility treatments. LEVEL OF EVIDENCE: 4 Laryngoscope, 131:1769-1773, 2021.

Subspecialty Training: Hospice and Palliative Medicine.

ABSTRACT: Physiatrists care for patients and families with complex medical needs, and primary palliative care is an important part of the comprehensive rehabilitation care plan. Palliative care improves patient and family quality of life and reduces healthcare costs. Clinical care guidelines for several physiatry patient populations now include the provision of palliative care.Current Accreditation Council for Graduate Medical Education physiatry residency program requirements include foundational palliative care skills. Similarly, current clinical palliative care practice guidelines enumerate standards that apply to the rehabilitation setting. However, there is a dearth of literature on the current state of palliative care training within physiatry programs, and hospice and palliative medicine remains one of the least subscribed physiatry subspecialties.In this article, we describe palliative care, highlight existing literature on palliative care needs within physiatry patient populations, and identify a core physiatry-palliative care skillset. We look both within physiatry and across other specialties to guide recommendations for palliative care education within physiatry residency programs. We also describe opportunities for post-residency fellowship training in hospice and palliative medicine.

Palliative versus hospice care in patients with cancer: a systematic review.

BACKGROUND: Guidelines recommend an early access to specialised palliative medicine services for patients with cancer, but studies have reported a continued underuse. Palliative care facilities deliver early care, alongside antineoplastic treatments, whereas hospice care structures intervene lately, when cancer-modifying treatments stop. AIM: This review identified factors associated with early and late interventions of specialised services, by considering the type of structures studied (palliative vs hospice care). DESIGN: We performed a systematic review, prospectively registered on PROSPERO (ID: CRD42018110063). DATA SOURCES: We searched Medline and Scopus databases for population-based studies. Two independent reviewers extracted the data and assessed the study quality using Joanna Briggs Institute critical appraisal checklists. RESULTS: The 51 included articles performed 67 analyses. Most were based on retrospective cohorts and US populations. The median quality scores were 19/22 for cohorts and 15/16 for cross-sectional studies. Most analyses focused on hospice care (n=37). Older patients, men, people with haematological cancer or treated in small centres had less specialised interventions. Palliative and hospice facilities addressed different populations. Older patients received less palliative care but more hospice care. Patients with high-stage tumours had more palliative care while women and patients with a low comorbidity burden received more hospice care. CONCLUSION: Main disparities concerned older patients, men and people with haematological cancer. We highlighted the challenges of early interventions for older patients and of late deliveries for men and highly comorbid patients. Additional data on non-American populations, outpatients and factors related to quality of life and socioeconomic status are needed.

How Do Claims-Based Measures of End-of-Life Care Compare to Family Ratings of Care Quality?

OBJECTIVES: Assess whether frequently-used claims-based end-of-life (EOL) measures are associated with higher ratings of care quality. DESIGN: Retrospective cohort study. SETTING/PARTICIPANTS: Deceased fee-for-service Medicare beneficiaries with cancer who underwent chemotherapy during July 2016 to January 2017 and died within 12 months and their caregiver respondents to an after-death survey (n = 2,559). MEASUREMENTS: We examined claims-based measures of EOL care: chemotherapy 14 days or more before death; inpatient admissions, intensive care unit (ICU) use, and emergency department (ED) visits 30 days or more before death; hospice election and the timing of election before death. Primary outcomes are family ratings of "excellent" care in the last month of life and reports that hospice care began "at the right time." Associations were assessed with logistic regression, adjusted by patient characteristics. RESULTS: Family rated EOL care as excellent less often, if within 30 days before death the cancer patient had inpatient admissions (1 hospitalization = 41.5% vs 51.5% none, adjusted difference -10.1 percentage points), ICU use (38.6% for any ICU use vs 47.4% none; adjusted difference -8.8 percentage points), ED visits (41.0% 1 visit vs 51.6% no visits; adjusted difference -10.6 percentage points), or elected hospice within 7 days before death. Among hospice enrollees, family more often reported that hospice began at the right time if it started at least 7 days before death (hospice 1-2 days before death 60.2% vs hospice 7-13 days 74.9%; adjusted difference +14.7 percentage points). CONCLUSIONS: Claims-based measures of EOL care for cancer patients that reflect avoidance of hospital-based care and earlier hospice enrollment are associated with higher ratings of care quality by bereaved family members.

Public Perceptions of Advance Care Planning, Palliative Care, and Hospice: A Scoping Review.

Background: Although access to advance care planning (ACP), palliative care, and hospice has increased, public attitudes may still be barriers to their optimal use. Purpose: To synthesize empirical research from disparate sources that describes public perceptions of ACP, palliative care, and hospice in ways that could inform public messaging. Data Sources: Searches of PubMed and other databases were made from January 2011 to January 2020. Study Selection: Studies reporting survey or interview data with the public that asked specifically about awareness and attitudes toward ACP, palliative care, or hospice were included. Data Extraction and Synthesis: Two reviewers independently screened citations, read full texts, and performed data abstraction. Twelve studies met inclusion criteria and included >9800 participants. For ACP, 80% to 90% of participants reported awareness, and a similar proportion considered it important, but only 10% to 41% reported having named a proxy or completed a written document. For palliative care, 66% to 71% of participants reported no awareness of palliative care, and those who reported awareness often conflated it with end-of-life care. However, after being prompted with a tested definition, 95% rated palliative care favorably. For hospice, 86% of participants reported awareness and 70% to 91% rated it favorably, although 37% held significant misconceptions. Limitations: A limited number of studies met inclusion criteria, and some were published in nonpeer reviewed sources. The studies reflect public perceptions pre-COVID-19. Conclusion: Consumer perceptions of ACP, palliative care, and hospice each have a distinct profile of awareness, perceptions of importance, and reports of action taking, and these profiles represent three different challenges for public messaging.

The Impact of Receiving a Family-Oriented Therapeutic Conversation Intervention Before and During Bereavement Among Family Cancer Caregivers: A Nonrandomized Trial.

Effective communication is the foundation of quality care in palliative nursing. As frontline palliative home care providers, nurses could foster more effective bereavement coping skills through therapeutic conversations. The purpose of this study was to evaluate the impact of a nursing intervention offered to bereaved family cancer caregivers. This was a quasi-experimental design, with a posttest-only comparison of the intervention and control groups receiving usual care. Bereaved caregivers (n = 51) receiving services from a specialized palliative home care unit participated and completed measures of depression, anxiety, stress, and grief reactions 3, 5, and 6 months after their close relative had died.There was a significant decrease in anxiety symptoms in the intervention group compared with the control group across all 3 time points. Anxiety and stress symptoms also decreased over time in the 2 groups combined, but this decrease was not observed for depression. When evaluating grief reactions, the intervention group had a lower mean of controlled grief responses, across the posttest period, than the control group.Results demonstrate that providing bereaved family caregivers the opportunity to participate in a therapeutic conversation intervention might reduce distressing symptoms in early bereavement.

An audit of end-of-life symptom control in patients with corona virus disease 2019 (COVID-19) dying in a hospital in the United Kingdom.

BACKGROUND: The literature contains limited information on the problems faced by dying patients with COVID-19 and the effectiveness of interventions to manage these. AIM: The aim of this audit was to assess the utility of our end-of-life care plan, and specifically the effectiveness of our standardised end-of-life care treatment algorithms, in dying patients with COVID-19. DESIGN: The audit primarily involved data extraction from the end-of-life care plan, which includes four hourly nursing (ward nurses) assessments of specific problems: patients with problems were managed according to standardised treatment algorithms, and the intervention was deemed to be effective if the problem was not present at subsequent assessments. SETTING/PARTICIPANTS: This audit was undertaken at a general hospital in England, covered the 8 weeks from 16 March to 11 May 2020 and included all inpatients with COVID-19 who had an end-of-life care plan (and died). RESULTS: Sixty-one patients met the audit criteria: the commonest problem was shortness of breath (57.5%), which was generally controlled with conservative doses of morphine (10-20 mg/24 h via a syringe pump). Cough and audible respiratory secretions were relatively uncommon. The second most common problem was agitation/delirium (55.5%), which was generally controlled with standard pharmacological interventions. The cumulative number of patients with shortness of breath, agitation and audible respiratory secretions increased over the last 72 h of life, but most patients were symptom controlled at the point of death. CONCLUSION: Patients dying of COVID-19 experience similar end-of-life problems to other groups of patients. Moreover, they generally respond to standard interventions for these end-of-life problems.

A Review of the Current State of Hospice Care in China.

PURPOSE OF REVIEW: This review was undertaken to analyze the main reasons behind the limited development of hospice care in China, and to put forward some suggestions. RECENT FINDINGS: Although the Chinese government has increased its support for hospice care in recent years, however, owing to the lack of education around hospice care and the heavy influence of the traditional Chinese Confucian concept of "filial piety," many individuals resist hospice care. Moreover, due to impaired patient rights, inadequate composition of hospice care teams, unbalanced geographical distribution, and limited service range, the development of hospice care in China is hindered. Hospice care education and continued training should be popularized and the government should strengthen the legal structure of the medical system to protect the rights of patients, families, and medical staff to promoting social support for hospice care. Through graded diagnosis and referral systems in medical institutions to integrate medical resources and expand the range of hospice care services.

Outcomes Associated With a Nurse-Driven Palliative Care Screening Tool in the Intensive Care Unit.

BACKGROUND: Access to specialty palliative care delivery in the intensive care unit is inconsistent across institutions. The intensive care unit at the study institution uses a screening tool to identify patients likely to benefit from specialty palliative care, yet little is known about outcomes associated with the use of screening tools. OBJECTIVE: To identify outcomes associated with specialty palliative care referral among patients with critical illness. METHODS: Records of 112 patients with positive results on palliative care screening were retrospectively reviewed to compare outcomes between patients who received a specialty palliative care consult and those who did not. Primary outcome measures were length of stay, discharge disposition, and escalation of care. RESULTS: Sixty-five patients (58%) did not receive a palliative care consult. No significant differences were found in length of hospital or intensive care unit stay. Most patients who experienced mechanical ventilation did not receive a palliative care consultation (χ2 = 5.14, P = .02). Patients who were discharged to home were also less likely to receive a consult (χ2 = 4.1, P = .04), whereas patients who were discharged to hospice were more likely to receive a consult (χ2 = 19.39, P < .001). CONCLUSIONS: Unmet needs exist for specialty palliative care. Understanding the methods of identifying patients for specialty palliative care and providing them with such care is critically important. Future research is needed to elucidate the factors providers use in their decisions to order or defer specialty palliative care consultation.

Follow-Ups with callers of a palliative and hospice care hotline for severely affected multiple sclerosis patients: Evaluation of its impact.

BACKGROUND: Palliative and Hospice Care (PHC) focuses on improving quality of life for anyone who has a serious illness. Multiple Sclerosis (MS) patients have significant PHC needs, yet PHC still mostly attends to cancer patients. The implemented and evaluated nationwide PHC-MS hotline (Strupp et al., 2017) appeared to provide a useful service to patients. OBJECTIVES: Prospective follow-up study to evaluate the impact of the hotline and analyse challenges and possible barriers to integrating PHC services. METHODS: Information on implementing PHC services was gathered through follow-up hotline consultations utilising a standardised documentary sheet. Data was analysed descriptively and several individual cases are presented. RESULTS: Of 303 calls to the hotline (54.5% female, mean age 51 years, 87.7% chronic progressive MS, mean duration of illness 17 years, median EDSS 8), for 84 (27.7%) PHC services were indicated. Of these 84 patients, 32 agreed to follow-up calls which were conducted at least once. For 6 (19%) patients, PHC service integration was successful. For 5 (16%) PHC was refused. For 5 (16%) PHC did not fit current patient needs, and for 7 (22%) PHC has not yet been contacted by patients (or caregivers). For a further 9 (28%) follow-ups revealed that no more consultation was possible (e.g., caller lost to follow-up). CONCLUSION: The PHC approach and its services as well as legislation are still highly focused on cancer care, although patients with long-term neurological conditions would likely benefit greatly from them.

Hospice and Palliative Care: An Overview.

Palliative medicine is specialized medical care for people with serious illness. Serious illness is one with high risk of mortality that negatively affects quality of life or function or is burdensome in symptoms, treatments, or caregiver stress. Palliative care improves symptom management and addresses the needs of patients and families, resulting in improved patient and caregiver quality of life and reduced symptom burden and health care utilization. Hospice is palliative care for patients with a prognosis of 6 months or less and is appropriate when goals are to avoid hospitalization and maximize time at home for patients who are dying.

Management of Urgent Medical Conditions at the End of Life.

Medical emergencies at the end of life require recognition of patients at risk, so that a comprehensive assessment and plan of care can be put in place. Frequently, the interventions depend on the patient's underlying prognosis, location of care, and goals of care. The mere presence of a medical emergency often rapidly changes an estimated prognosis. Education of the patient and family may help empower them to adequately handle many situations when clinicians are not available.

A mixed-methods systematic review and meta-analysis of barriers and facilitators to paediatric symptom management at end of life.

BACKGROUND: Symptom management for infants, children and young people at end of life is complex and challenging due to the range of conditions and differing care needs of individuals of different ages. A greater understanding of these challenges could inform the development of effective interventions. AIM: To investigate the barriers and facilitators experienced by patients, carers and healthcare professionals managing symptoms in infants, children and young people at end of life. DESIGN: A mixed-methods systematic review and meta-analysis was undertaken (PROSPERO ID: CRD42019124797). DATA SOURCES: The Cochrane Library, PROSPERO, CINAHL, MEDLINE, PsycINFO, Web of Science Core Collection, ProQuest Dissertations & Theses Database, Evidence Search and OpenGrey were electronically searched from the inception of each database for qualitative, quantitative or mixed-methods studies that included data from patients, carers or healthcare professionals referring to barriers or facilitators to paediatric end-of-life symptom management. Studies underwent data extraction, quality appraisal, narrative thematic synthesis and meta-analysis. RESULTS: A total of 64 studies were included (32 quantitative, 18 qualitative and 14 mixed-methods) of medium-low quality. Themes were generated encompassing barriers/facilitators experienced by carers (treatment efficacy, treatment side effects, healthcare professionals' attitudes, hospice care, home care, families' symptom management strategies) and healthcare professionals (medicine access, treatment efficacy, healthcare professionals' demographics, treatment side effects, specialist support, healthcare professionals' training, health services delivery, home care). Only one study included patients' views. CONCLUSION: There is a need for effective communication between healthcare professionals and families, more training for healthcare professionals, improved symptom management planning including anticipatory prescribing, and urgent attention paid to the patients' perspective.